Back to Blood: The Sociopolitics and Law of Compulsory DNA Testing of Refugees

Since October 2012, certain family members of refugees seeking reunification through the United States Refugee Admissions Priority Three program must undergo DNA testing to prove they are genetically related. The putative purposes of the policy include fraud prevention, enhanced national security, and greater efficiency in refugee claims processing. Upon close inspection, however, the new policy generates significant sociopolitical and legal concerns. The notion of what constitutes a family is significantly narrowed. Required DNA testing may violate domestic laws and international human rights instruments regarding voluntary informed consent, privacy, and anti-discrimination. Traditional legal solutions insufficiently remedy these concerns and cannot prevent the collective march towards an intractable risk society that views the “Other” as a potential fraud. Alternative strategies to mitigate the impact of the new policy are recommended. Such strategies can allow for a more nuanced understanding of family and a firmer understanding of the inherent but also uncertain risks of DNA technology in the immigration and refugee context

Ethics governance in Scottish universities:How can we do better? A qualitative study

While ethical norms for conducting academic research in the United Kingdom are relatively clear, there is little empirical understanding of how university research ethics committees (RECs) themselves operate and whether they are seen to operate well. In this article, we offer insights from a project focused on the Scottish university context. We deployed a three-sided qualitative approach: (i) document analysis; (ii) interviews with REC members, administrators, and managers; and (iii) direct observation of REC meetings. We found that RECs have diverse operation and vary in terms of what members understand to be the remit of their REC and what should constitute the content of ethics review. Overall, though, most participants perceive university RECs as operating well. When asked what they consider to be areas for further improvement, most commented on: implementation of an online system; more experience with how to evaluate various kinds of research projects; best practice exchange and training opportunities; more accurate reflection of the REC role as part of the university’s workload allocation model; and greater recognition of the importance of research ethics governance in the university’s research environment, and, for the members themselves, their career advancement. Based on our findings and subsequent discussions during an end-of-project roundtable with stakeholders, we propose a model of collaboration that can address some of the identified areas that could benefit from further improvement. This model would facilitate a heightened awareness of the importance of supporting REC members in their own effort in assisting students and staff alike in undertaking as ethically robust research as possible

Signalling standards for progress:Bridging the divide between a valid consent to use patient data under data protection law and the common law duty of confidentiality

In this article, we analyse the legal components of disclosing confidential patient information under the UK's common law duty of confidentiality (CLDoC) and processing personal (health) data under the UK's General Data Protection Regulation (GDPR) and Data Protection Act 2018. We describe the ostensible divide between the CLDoC and data protection law when it comes to the requirements of a valid signal of consent by a patient to use and disclose patient information, obtained by a health professional in the context of direct care, for health care and health research purposes. Ultimately, our analysis suggests that we are saddled, at least in the medium term, with two regimes operating with different standards of a valid consent-while putatively protecting similar interests. There is, however, opportunity for progress. It is possible to improve professional guidance on the interaction between the regimes and to achieve significant normative alignment without aligning the signalling standard for consent; this would promote consistent protection of reasonable expectations of patients across both regimes. Further coherence would require aligning not only the standard, but also the role played by consent under each regime. Here we argue that, in relation to direct care, any such shift should be away from consent as the normal justification. In relation to health research, on the contrary, it should be toward consent as the normal justification for use and disclosure of patient information under both the CLDoC and data protection law